Creating Strong Integration With Canadian Health Information Systems

NAACCR’s editorial review board looks at central cancer registries in Canada and their strong integration with Canadian health information systems.

As members of the Narrative editorial board, we have asked Dr. Jonathan Simkin to highlight how provincial and territorial cancer registries (PTCRs) in Canada operate from a data collection perspective to report on Canadian cancer surveillance trends. Jonathan resides in Vancouver, British Columbia, Canada, and is currently the Scientific Director of the BC Cancer Registry at BC Cancer, a program of the Provincial Health Services responsible for specialized cancer services across the cancer care continuum in the province of British Columbia. Additionally, he is the Co‐Chair of the Canadian Council of Cancer Registries (CCCR), a collaboration between the 13 Canadian provinces and territories and the Centre for Population Health Data of Statistics Canada.

Jonathan completed a Master of Public Health and PhD in Population and Public Health at the University of British Columbia (UBC) under the supervision of Dr. Gina Ogilvie, a Tier 1 Canada Research Chair in Global Control of HPV-related diseases and prevention. Jonathan’s thesis covered various spatial epidemiological methods to examine cancer incidence in British Columbia, Canada. Jonathan’s research interests are in geographic and social inequities in cancer, small-area disease mapping, and novel approaches to cancer registry practice and data collection using natural language processing. The following description of Central Canadian cancer registries was provided by Jonathan and offers an informative summation of the Canadian process.

In 2021, there were 229,200 new cancer diagnoses estimated among Canadians (as reported by the Canadian Cancer Statistics Advisory Committee). The lifetime probability of developing cancer is 2 in 5 Canadians, while the lifetime probability of dying from cancer is 1 in 4. Additionally, cancer is the leading cause of death in Canada and was responsible for nearly 84,000 deaths in 2021. The most common cancers causing death are lung (24.8% of all cancer deaths), colorectal (11.3%), pancreas (6.6%), breast (6.5%) and prostate cancers (6.5%). Importantly, the cancer burden is projected to increase in Canada due to the aging and growth of the population but is also influenced by important changes in risk factors for cancer. Notably, nearly 4 in 10 cancers are attributed to preventable risk factors in Canada. Monitoring cancer incidence and mortality using cancer registry data enables identification of emerging patterns, evaluation of cancer prevention efforts over time, and development of public health policy that is specific for Canadian needs.

Provincial and Territorial Cancer Registries

Canadian cancer surveillance consists of 13 provincial and territorial population‐based cancer registries that collect information on all reportable tumors among Canadian residents along with patient demographic and geographic data. Each PTCR is responsible for collecting data among residents of their province or territory, as well as maintain data quality and completeness of records according to Canadian and international coding standards. Although PTCR practice may differ across the provinces, most of the information collected is ascertained from provincial/territorial level health information systems attributed to universal health care systems in Canada. For example, the BC Cancer Registry is integrated with the provincial lab information system and receives all cancer pathology reports electronically in near real time. Additionally, BC leverages the US CDC’s Electronic Mapping, Reporting, and Coding (eMaRC) Plus software for processing and computer-assisted coding.

Provincial and territorial cancer registries report new primary cancer diagnoses to Statistics Canada following the SEER reporting rules, through annual submissions, which are integrated into the national Canadian Cancer Registry (CCR) database. The CCR is a dynamic database of all primary cancer cases diagnosed among Canadian residents since 1992. The data submitted by the PTCRs to Statistics Canada describe both the individual with the cancer, and the characteristics of the cancer. Similar to other national‐level databases, the CCR contains information about the type and number of primary cancers diagnosed for each person. This person‐oriented database has the advantage of being able to provide longitudinal data for each cancer patient such that a single person record exists for all tumors diagnosed during that person’s lifetime in any area within Canada. This single person record is assured through a yearly duplicate resolution process led by Statistics Canada where possible duplicate records are reported back to the PTCRs for resolution of ownership.

The CCR and its reporting guidelines are governed by the Canadian Council of Cancer Registries, which includes representation from all provincial and territorial cancer registries and the Centre for Population Health Data at Statistics Canada. This governance and surveillance model, with a single standard setter, ensures the collection of standardized and comparable data across all PTCRs, and enables reporting on measures of the cancer burden at the national level to support health planning and decision making. Having a single standard setter within Canada, in many respects, simplifies the amount of work and infrastructure needed for national‐level reporting.

Most provinces voluntarily submit data annually to NAACCR for certification as an additional level of assuredness of completeness, quality, and timeliness. This Canadian data is included in North American‐level surveillance in CiNA. Canadian cancer registries value their connection with NAACCR. Both our members and members of Statistics Canada serve on many steering committees, task forces, and working groups as well as pursue NAACCR board positions. The Canadian Council of Cancer Registries looks to NAACCR for information on the adoption of new standards. Additionally, Canadian registries rely on NAACCR for registrar training sessions.

Benefits to CCR Being in the Statistics Canada Environment

Statistics Canada is Canada’s national statistical agency reporting to the federal government. Its legal mandate covers the development of the whole breadth of socio‐economic statistics including both the Censuses of Population and Agriculture, Economic Statistics which cover everything from production to retail sales and services alongside the price indices, to areas including population, labour, justice, and health data on the social side. This national statistical model supports a critical mass of expertise and infrastructure for data collection, processing and statistics augmented by subject matter experts.

Given that the CCR sits within the Statistics Canada environment, there are significant opportunities to explore important population oncology questions through data linkage with various national surveys and population-based datasets, including vital statistics, census of population, tax and income records, health surveys and direct health measure programs operated by the Agency including the Canadian Health Measures Survey. The Statistics Canada Population Health Data Division leads several efforts to measure the burden of cancer across sociodemographic and economic indicators to support the development of evidence‐based public health policy and programs. Additionally, the Agency facilitates access across the country to Statistics Canada datasets and data linkages for academic and surveillance communities via a secure environment.

Population‐based cancer registries provide a foundation of information to support monitoring trends, evaluating cancer prevention programs, and guiding healthy public policy towards reducing the burden of cancer. Canadian cancer registry leads continue to work with partners across the health care systems within Canada to improve the quality and efficiency of data collection, while expanding the ability of the cancer surveillance experts across the country. Integration with health information systems that are structured within a universal health care system and having a single standard setter streamlines the process for the PTCRs. The cancer registries in Canada work closely together to advance training, education, and innovations in registry practice across Canada. Additionally, the registries work with knowledgeable surveillance and data experts within Statistics Canada to optimize the process of cancer surveillance reporting and facilitate access to data across Statistics Canada datasets for important population oncology research.